December 11, 2009

A Good Night Out

If you have not heard “O Holy Night” sung by Kristen Watson, you have not heard “O Holy Night!” Music has the power to break through defenses and touch us at the core of our being. When trite or contrived or done badly, it has no power but to annoy. When done well, with honesty and integrity, there is no defense that can repel its power to engage one’s spirit.

When Kristen sang “Gesu Bambino” there were no defenses left. The last note with its quiet and gentle power, set the stage for “O Holy Night.” Since retiring from the Pastoral Ministry, a combination of Caregiving demands and traveling to visit family have diminished dramatically the opportunities to attend the most powerful worship opportunities at Christmas. Last night’s concert was an experience powerful enough to fill the spiritual longing that comes with each Christmas season.

What added to the deeply felt comfort was that I was able to sit with Mary Ann in the little raised area for those in wheelchairs. My ticket was for a seat behind and a dozen feet away from Mary Ann. I couldn’t bring myself to sit down separated that far from Mary Ann. It surprised me a little to feel so strongly the need to be next to her. In the past, I have generally retreated into my own world at concerts, listening intently, immersed in the music. Someone suggested the possibility, and I checked to be sure it was acceptable for me to sit in that area. Companion Care Aide, Debbie, sat on the other side of Mary Ann. As it turned out, there was no need for a trip to the bathroom during the concert. All of us got to experience fully the entire program of music from silly to sacred.

There was a dimension to the evening that I did not fully anticipate. Having retired from the role of Senior Pastor at the congregation I served for over a dozen years, I have not seen and talked with more than a handful of the members of that congregation since I retired a year and a half ago. It was like a reunion. It didn’t take long to realize how much I miss the people who had become a part of my life during those years.

There is an intimacy that develops between pastor and people that is hard to describe. The ministry is not as much a job as it is a relationship. Certainly there are lots of other professions that include at least as strong a relational element. I can only speak to the ministry, more specifically, my experience of it. Last evening I redicovered how connected I came to feel to all those folks, and how much I have missed getting to interact, to talk and listen and kid around with people I care about.

The combination of celebrating a reunion of sorts as well as being lifted spiritually by the music made for a very good night out. Mary Ann was greeted and engaged by many, and she too enjoyed the music.

After two days holed up in the warm house, protected against the elements (snow and bitter cold), we both needed the time out, distracted by something other than the television.

The change in the medicine mentioned in last night’s post seemed to have the hoped for consequences. There was a return to a more normal level of intestinal activity almost immediately on discontinuing the generic Mestinon. Today has been a fairly normal day. Mary Ann got up early, then took a two and a half hour nap. We got out to lunch at BoBo’s, headed to the Honda dealership for a quick minor repair of the CD player in the van, and visited the home of a friend, one of Mary Ann’s closest friends from almost the very first day we arrived here nearly fourteen years ago.

Tonight Mary Ann had some pain that needed a nitroglycerin pill. Those are always scary moments, although not at all uncommon for folks with heart blockages such as Mary Ann’s. The pain subsided after taking the pill. She woke up a few moments ago and needed a trip to the commode. The Thursday people are back. She wanted to know what the next family was going to do. She insisted on closing the bedroom door while she used the commode so that they could not see her. I hope she is able to get back to sleep, and that she has a restful night.

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December 10, 2009

Giving up on a New Medication

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: Burdens of Caregiving, Caregivers Bathroom Duties, Caregivers Medical Responsibility, Caregiving Spouses, Coping with Challenges, Fainting complicates Parkinsonians' Lives, Feelings of Care Receivers, Feelings of Caregivers, Meaningful Caregiving, Mestinon for Fainting Problem, Parkinson's Disease, Parkinson's Disease Dementia, Practical Caregiving Ideas, Pyridostigmine, Quality of Life |
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If there were any indication that it would be worth the trouble to deal with a very annoying side effect, we might hang in there in hopes that the problem would eventually subside. There is no clear evidence that the Pyridostigmine (brand name, Mestinon) has had any impact on Mary Ann’s fainting spells (syncope) due to the Orthostatic Hypotension (sudden drop in blood pressure when standing up).

It has only been a little over a week, but multiple trips to the bathroom each day with something close to diarrhea has worn us both out. Most of the times there has been too little warning to get there in time. Each medicine brings with it a cluster of side effects. There are no perfect meds. There is always a balancing act weighing the benefits against the problematic side effects.

Since the high blood pressure is such a serious problem, this is no small decision. We will continue the Midodrine at the lower dosage we started just before adding the Pyridostigmine. The Midodrine keeps her blood pressure at a higher level than is healthy for her in the long term, but it reduces the number and intensity of the fainting episodes. We will accept the vulnerability to fainting spells that comes with the lower dose of Midodrine. If those spells increase to the extent that they are stealing from us the capacity to have a reasonable quality of life in our time together, we will increase the dosage of the Midodrine to last summer’s level when the fainting had gotten out of hand.

The last two days have kept us inside for the most part due to bad weather. It is at times like these that it becomes clear again that 24/7 with one another it tough to maintain. The needs that come so very often become harder to deal with in a pleasant and patient way.

Gratefully, we have a treat tonight away from the house. It will be a challenge, since the wind chill today has never gotten above zero. The air temperature is heading to zero or a degree or two below by morning. The treat is too good to pass up. It is a Christmas Concert by the local Symphony. What makes it such a treat is that a young woman who grew up in the congregation I served is singing at the concert. Her Mom is on the Staff at that church. She has the most beautiful voice I have ever heard. She is based in Boston now, and, on occasion is a vocal soloist for the Boston Pops. Check out her Blog for a real treat: http://kristenwatsonsoprano.blogspot.com/

Arranging to get to the concert was no small task. Mary Ann wanted to go, but I could not be sure she would not be able to go at the last minute. Then came the prospect of getting there and at some point needing one or more trips to the bathroom. Given the side effects of the new medicine she was taking, that was pretty likely.

While I do not yet know exactly how the evening will go, I realized how important it was to me to be able to experience the evening’s music. I called the Agency, Home Instead, that we have used in the past. The Companion Care Aide who came on Sunday mornings before I retired was available. She committed to coming this evening to be with Mary Ann here at home if need be. I called to buy a ticket to the concert for the Aide so that if Mary Ann could go she could be there with Mary Ann to help her to the bathroom. To my surprise, a complimentary ticked now awaits us if we need it.

Enough for now. Tomorrow’s post will include a reflection on the evening.

December 9, 2009

Dental Hygiene

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: Bleeding Gums after Dental Care, Blood Thinners and Bleeding Gums, Burdens of Caregiving, Caregivers Bathroom Duties, Caregivers Medical Responsibility, Caregiving Spouses, Chronic Disease, Coping with Challenges, Dental Care Needed, Dental Hygiene for Chronically Ill, Dental Problems with Parkinson's, Feelings of Care Receivers, Feelings of Caregivers, Incontinence, Lewy Body Dementia, Meaningful Caregiving, Mouth Care by Caregivers, Non-Medical Consequences of Parkinson's, Parkinson's Disease, Parkinson's Disease Dementia, Parkinson's Support Group, Practical Caregiving Ideas, Quality of Life |
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In the past, Mary Ann would do almost anything to avoid going to the dentist. Dr. Ron when we were in Oklahoma City and Dr. Bob here have had a gentleness that won her over. She goes four times a year now, without balking.

Four times a year may seem more often than necessary. During the years we had dental insurance, it only paid for two of the four times each year. Why four? Two reasons: 1. lack of manual dexterity; 2. lack of adequate caregiving. This is among the many things of which I am not proud. I just can’t bring myself to do the mouth care for Mary Ann that she cannot do herself. I have no excuse. I do a reasonable job of a number of other things, but not that. Going to the Dental Hygienist four times a year helps compensate for the lack of good care at home.

As is so often the case, medication that does much good in one area of health care can create problems in another area. The combination of Plavix and Aspirin helps protect against another stroke as bits of plaque can break loose from the lesion on the wall of one of Mary Ann’s carotid arteries. That combination of meds thins her blood to the extent that by the time the Dental Hygienist is done, there is much bleeding.

After each cleaning of her teeth, we put a Chux (absorbent pad lined with plastic) on her pillow so that the blood from her gums will not stain the bedding. We learned to do that the hard way, as is so with most of the things we have learned over the years.

There was a point at which we were looking at multple thousands of dollars in potential work on her teeth. Dr. Bob has managed to keep her mouth in pretty good shape without doing major work. The prospect of many hours in the dentist chair with the vacillations between stiffness and involuntary movements did not make major dental work an acceptable option. There were a couple of extractions along the line. Surprisingly, Mary Ann found the extractions easier than having crowns done. She was surprised at how fast she was in and out of the chair when the extractions were done. She had no problems associated with those procedures.

Actually, the dental issues that come with Parkinson’s are seldom mentioned. We have tried a number of electric toothbrushes. Mary Ann has a very small mouth providing little room for normal sized brushes. We have often gotten children’s toothbrushes. Even the smallest head for an electric brush does not seem to work for her. The manual dexterity needed for brushing teeth is just not there.

Along with many other diseases, it is often problems that are not directly caused by the disease process itself that come to be the most troubling as time goes by. They are things that are not symptoms of the disease but rather consequences of its long time presence. As an example, I am watching the skin on the underside of Mary Ann’s forearms. She spends most of her days in the transfer chair, with her arms resting on the arms of the chair. I am watching to be sure that the skin under her arms does not begin to break down. The impact on her dexterity and spatial judgment affects the ease of eating and drinking, making her vulnerable to weight loss and dehydration. Our Cardiologist feels that the heart issues were a result of the intense dyskinetic movements that are a side effect of the primary Parkinson’s Medication after many years of taking it.

When a person becomes a Caregiver, it is not enough to listen to and read about the disease itself and its symptoms. It is interacting with others, in support groups, online communities, talking with other Caregivers, reading what has been written by people who have either had the disease or cared for someone with the disease that provides the full story.

I had the advantage of being in a profession that took me into hospital rooms often many times a week. Folks made a point of sharing their medical problems with me as I ministered to them. As I looked and listened, I learned much of what has helped me tune in to Mary Ann’s problems. I learned how to talk with and listen to the medical professionals, making it easier to ask the right questions and understand the answers.

For now, I just hope the gums heal and the bleeding subsides. It is surprising how helpful it is to use a cold substance to ease mouth discomfort after a visit to the dentist. A chocolate shake from Sonic did the trick this time. Did you know that Sonic just switched to using real ice cream in their dessert specialties (shakes and sundaes and blasts)? Does that news leave you also wondering what it was they used to make those treats before they switched to real ice cream?

November 23, 2009

Colon Coronation — Intestines Rule!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping | Tags: Burdens of Caregiving, Caregiver Bathroom Duties, Caregiver's Whining, Caregivers Bathroom Duties, Caregivers' Role in Waste Management, Caregiving Spouses, Challenges for Male Caregivers, Colon Rules Caregivers, Coping with Challenges, Feelings of Care Receivers, Feelings of Caregivers, Grumpy Caregivers, Help Needed for Caregivers, Instestinal Activity and Caregivers, Meaningful Caregiving, Parkinson's Disease, Parkinson's Disease Dementia, Practical Caregiving Ideas, Quality of Life |
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I knew it would happen! It was not a disaster, just inconvenient timing. In the middle of the prayers in the Evening Service at church tonight, Mary Ann whispered, “I need to go to the bathroom.” That she did not wait for a more opportune moment to say something made clear to me immediately that we were not talking about a minor matter.

I have seen the dark cloud gathering the last three days as there was virtually no intestinal activity. I know, are we never happy? In some recent posts I have mentioned the bit of something close to diarrhea that came after the hospital stay. That stopped and Mary Ann started eating better. It was not rocket science to figure out that at some point, three days of eating well and producing little would at some point produce a lot.

At certain points in the prayers tonight, when information on the next petition request was being gathered, I moved to the lobby area, got the wheel chair and returned to the pew. As soon as the prayers were done, a seemingly interminable length of time, I got Mary Ann into the chair, and we burned rubber taking off to get to the women’s rest room. Mary (who schedules the Volunteers from church for Mary Ann) was available and willing to guard the door to the restroom.

While we were in the the women’s room together, Mary Ann can’t deal with that particular matter by herself, a number of ladies needed to be turned away. Gratefully there are rest rooms on the lower level also. One person was in such need that she headed into the men’s room while Mary watched the door for her.

Actually, I had anticipated this problem earlier in the day. As the dark cloud loomed, I expected two or three days of work getting the job done. I thought it might begin soon, so I added a package of flushable wipes to the contents of Mary Ann’s purse when we left for church this evening.

The time at church began with a Thanksgiving dinner provided by our Junior Youth program. The food was great. The two youth at our table, Trina and Makynna, did a great job of serving. They also participated in the table conversation, noting afterward that the two men at the table seemed to do all the talking. Eddie and I just have lots of things that we are convinced need to be said!

The meal was followed by the worship service. I thought that being out for such a long time this afternoon/evening would increase the likelihood of her intestines becoming active. As inconvenient as was the timing and how long it took, the activity seems to point to a return to more normal and regular production. That is a good thing.

Those of you who are Caregivers can appreciate the observation that intestines rule. One of the main reasons we make virtually no commitments that can’t pretty easily be cancelled at the last minute is the unknown of when intestinal activity will happen. One of the earliest posts I wrote last winter described one of the areas of responsibility in a Caregiver’s portfolio as waste management.

I guess the counsel for Caregivers is that we learn to take in stride the duties that come with the the role of Waste Manager. We may as well concede that the colon has been crowned king. Otherwise we will squander precious time being frustrated, grumpy and feeling sorry for ourselves. I suspect we have already spent enough of the few days we have on such self-defeating pursuits.

November 14, 2009

Fainting Returns!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Uncategorized | Tags: Adjusting Medications, Administering Medications, Autonomic Nervous System and Parkinson's, Autonomic Nervous System broken, Balancing Medications, Burdens of Caregiving, Caregivers Bathroom Duties, Caregivers Medical Responsibility, Caregiving Spouses, Cause of Fainting, Coping with Challenges, Disposable Underwear Problems, Fainting complicates Parkinsonians' Lives, Fainting with Parkinson's, Feelings of Care Receivers, Feelings of Caregivers, Incontinence, Lewy Body Dementia, Managing Medications, Meaningful Caregiving, Midodrine for Fainting problem, Orthostatic Hypotension, Parkinson's Medications, Parkinson's and Parasympathetic Nervous System, Parkinson's Disease, Parkinson's Disease Dementia, Practical Caregiving Ideas, Problems with Falling, Reason for Fainting, Using Depends |
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Twice today Mary Ann fainted. She has not done so in many weeks. The fainting is due to a sudden drop in blood pressure, referred to as Orthostatic Hypotension. It is another of the systems run by her compromised Parasympathetic Autonomic Nervous System. That system runs the smooth muscles, such as those that create the peristaltic movement that keeps everything moving through the alimentary canal (esophagus, stomach, intestines, colon). It also runs the smooth muscles that cause our arteries to constrict when we stand up, raising our blood pressure to compensate for the pull of gravity.

That was a lot of technical language that simply means that people with Mary Ann’s version of Parkinson’s and Dementia are often constipated and often faint after getting up from a sitting or lying position. In both cases today, Mary Ann fainted when on the toilet stool, after trying to get up. Having watched this at close range for so many years, it was clear to me that both syncopal episodes (medical term for fainting is syncope) happened when a dose of her generic Sinamet kicked in. When it kicks in her body starts involuntary wavy motions called Dyskinesias. Sinamet (Carbidopa-Levadopa) is the main medication that treats Parkinson’s. It is the same medication that has been used for decades. Most of the newer meds just help the Sinamet do its job better.

During the hospital stay, I suggested lowering her dosage in half of the medicine (Midodrine) that raises her blood pressure to keep her from fainting. Last summer we doubled the dosage when the fainting got out of hand and was reducing dramatically our quality of life. That medication and the higher BP slowly damages the heart, reducing its flexibility. Her heart is enlarging, stiffening, her kidneys are being damaged. If we eliminate the Midodrine, it might add a little time, but the time would be of little quality. The goal of my suggestion of lowering the dosage is to find a middle ground that gives us the best we can get of both longevity and quality.

I am not yet ready to raise the dosage of Midodrine. If the fainting comes only when the Sinamet kicks in, I think we can manage the problem. If the fainting increases to the level it was last summer (multiple protracted fainting spells, sometimes even just when sitting in her chair) we will need to increase the Midodrine back to the full dosage. We will do what is necessary when it becomes necessary. Gratefully, the Cardiologist and Neurologist understand the problem and have given Mary Ann and I the freedom to adjust the two meds (Sinamet and Midodrine) within a prescribed range as we determine appropriate. I am grateful for the latitude in dosing, and I also feel the weight of that responsibility.

The day continues: Mary Ann slept until about 2pm. I got her some lunch. She did reasonably well at feeding herself. She still is not eating enough. I convinced her to let me help her with some cake after lunch. She kept putting the fork to her cheek instead of to her mouth. She was resisting my help, but eventually I was able to get most of it in her mouth She managed a snack of ice cream later.

We got to the grocery store! I was hoping we could get it done. Since she is in the wheel chair, mobility is not an issue when going to the grocery. I push her with one hand and pull the grocery cart behind with the other. It is a little tough on my wrists, especially when she drops her feet to the floor and I am pushing against rubber soles on a tile floor. Years ago, she used one of the motorized carts. We gave that up. There were too many displays put at risk by a driver with spatial issues.

We brought home Sesame Chicken from the Chinese counter in the store, so supper went pretty well. She went to bed at about 7pm and has been sleeping pretty soundly since. The first couple of hours after she goes to bed are usually pretty good. I will continue this post tomorrow with a report on how the night went (way more information than any who read this blog actually want or need).

Next day (Friday): The night wasn’t too bad, but it was another early morning with multiple trips to the commode in the wee hours of the morning and finally up before 7pm.

She ate a good breakfast with my help on the bowl of cereal. After a while in her chair she wanted to get dressed. Immediately after getting dressed, she got back in bed for a nap. That was about two and a half hours ago. She did get up once for a trip to the bathroom.

The issue of fainting continues to be a concern. She said that she has been dizzy the last couple of days. That is usually from the low BP. I tried to take her blood pressure while she was lying in bed this morning, but it didn’t register on the electronic monitor. That usually means it is too high for it to measure. BP is usually highest when lying down, since the heart is not pumping against gravity.

While she hasn’t actually fainted today, she came close to it once when I was trying to get her to the bathroom. She also has seemed to be dizzy at least a couple more times. I suspect that the switch to the higher dose of Midodrine will be needed. I am giving it another day to be sure.

The day continues: After getting up from her nap, I discovered something mightily irritating. We had to start using new disposable underwear today. Kroger’s generic has worked very well for us. They have just discontinued the combination male/female one for new gender specific ones. The same size and weight as we used before, but in the new female version managed to leak. It happened twice. All her jeans had to be washed.

I can only conclude that someone in the Kroger braintrust decided that it would be better for sales if they marketed gender specific disposables. That would be fine if they had bothered to make them in a way that actually accomplished their purpose. To those of us who use them, it is no small inconvenience. The small amount it took to leak the two times it happened today suggest that a long nap or a long time between trips to the commode during the night would provide enough leakage to demand changing the bedding and washing the linens, as well as whatever she was wearing.

I took them back to the store, got my money back and bought the Depend’s brand in hopes that they will work better. Even though they also are gender specific, the appear to be constructed in a way more like the generic male/female ones we were using. The Depend’s brand, of course are $12 and change versus the $9 and change price for the generics. We buy three or four packages every time we go to the store. There goes the grocery budget. We will soon determine if the Depend’s are adequate to the task.

The good news is that I found part of a package of the old generic ones in the bathroom closet. Hopefully that will get us through until tomorrow. I change the disposables often to protect against urinary tract infections.

Mary Ann was up for a while this afternoon, after her long nap. She ate a good lunch, lots of left over Sesame Chicken and a huge piece of cake with ice cream. We were able to run a number of errands with her in the car while I did the errands. She is now down for her third nap. It didn’t begin until almost 5pm. It is now almost 7:30pm. She has had no supper. I don’t think there is a chance there will be much sleeping tonight.

November 12, 2009

Sleep! Sweet Sleep! Plus Physical Demands

Posted by PeterT under Daily Challenges, Family, Meaningful Caregiving, Practical Tools for Coping, Sources of Strength, Uncategorized | Tags: Burdens of Caregiving, Caregiver's Health, Caregiver's Source of Strength, Caregiver's Therapy, Caregiver's Whining, Caregivers Bathroom Duties, Caregivers Physical Demands, Caregiving Spouses, Children of sick parents, Coping with Challenges, Feelings of Caregivers, Help Needed for Caregivers, Incontinence, Keeping Care-receivers safe, Meaningful Caregiving, NIght time Commode Trips, Parkinson's Disease, Parkinson's Disease Dementia, Physical Risks to Caregivers, Picking up Handicapped from Floor, Practical Caregiving Ideas, Quality of Life, Sleepless Nights, The Effect of Chronic Illness on Children, Transfers of Handicapped, Turning Handicapped in Bed, Wheel Chair Transfers |
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Whatever happens today, last night we both got a good quality, long night’s sleep. Mary Ann is still sleeping. It is a little after 9:30am. Because of Veteran’s Day yesterday, Bath Aide Zandra did not come. She has arranged to come later this morning, so Mary Ann will need to be up soon.

Later: Mary Ann made it up in time to get her meds taken before Zandra arrived. She has had another loose stool (sorry!) which has been happening for many days now. It raises the question as to whether or not there might be some sort of bug causing some of her problems. We will wait it out. So far it is manageable. i just want to be sure Mary Ann doesn’t get dehydrated. Checking urine color (sorry again!) should provide evidence one way or the other on that. We will not involve doctors and hospitals unless there is something clearly demanding that involvement. If the weight loss continues, I will probably phone the GP’s office for a recommendation of a supplement. Actually, I will also check with the LBD Spouse Caregivers online group. They have far more experience with what works than any medical professional. It seems clear that Mary Ann is just not getting enough calories in to maintain her weight. Oh how I wish I could painlessly transfer about twenty pounds from me to her. I tried to get her to eat a some spectacularly sweet and tasty and moist cherry (homegrown and canned) and nut coffee cake that Maureen brought yesterday. She just wouldn’t eat anything. I, of course, had a huge piece.

After the intestinal activity, Mary Ann decided to lie down again. She has seemed very tired since getting up this morning.

Gratefully, whatever strain lifting Mary Ann from the floor the other night seems to have been healing on its own. The physical demands on Caregivers are often substantial and constant. When I read the online posts of other caregiving spouses, I wonder how on earth they can do it. Most of them are women, many of them my age or older. Some of them have husbands who weigh two or three hundred pounds (one is a former heavy weight boxer). I have no idea how they deal with the demands. Many have a Hoyer lift to use when necessary. We have one also, but have needed to use it only a couple of time in the years we have had it.

The physical demands of course include helping Mary Ann up from the floor when she falls. Our system is not necessarily recommended by physical therapists, but has worked for us for many years. When she has fallen, I work at sliding her (by pulling on her legs) into an open space where she can lie on her back with her feet toward me and her head away from me. I put my feet together in front of hers so that they won’t slide, she reaches up and I take hold of her hands. I rock back, using my weight as a counter balance so that my back is not involved in the process of lifting.

The risks in that approach are mostly to Mary Ann’s arms and shoulders. Again, since she is not heavy and we have been doing it for so many years, her arms and shoulders seem strong enough to manage. So far there have been no noticeable side effects to that process.

One of the movements that has created problems for me in the past, is that which is required to turn Mary Ann in bed and move her to the center of the bed so that she doesn’t risk falling off the side of the bed (been there!). We have single, adjustable beds. For many years she has been able to climb on all fours on to the bed and flop down one way or another. She has come very close to flopping right off the edge of the bed on to the floor. Now, most of the time she simply cannot negotiate that movement. When she tries, she usually gets stuck on all fours on the bed or with one foot still on the floor, unable to move any farther in the process.

Now, most often she sits on the side of the bed, and if she wants to lie on her left side, facing the television, I cradle her and twist her in a sort of dramatic swinging motion until she is facing the appropriate direction. Then I lean forward, slide my arms under her and pull her toward me to center her on the bed. That is the motion that has caused back pain in the past. Now, I squat down and let my body weight (lot’s more than her body weight) pull her to the center of the bed.

If she wants to lie on her right side, the side of choice for her, again, she sits on the side of the bed. I let her head down to the pillow and reach with my right hand to lift her feet on to the bed. Then I travel to the other side of the bed to pull her to the center. Since the size of the bedroom does not allow much space between the two beds, I often can’t seem to get accomplished the motion using my body weight. Most often, I slide my arms under and just pull her to the center with my arm muscles, a movement not unlike doing a curl. Again, that keeps from involving my back in the process.

Now with that image in mind, imagine the nights she is up every few minutes. One of those two actions of moving her to the center of the bed happens every time she gets up, even just to sit on the side of the bed. When I watch her on the monitor, if she begins to move at all, I head in to see what she needs. Sometimes she just needs to be turned from one side to the other, or the covers have gotten twisted out of place.

When we travel, the large beds pretty much preclude my reaching under her to move her. I can do some manipulating to help position her, but most of the options are simply won’t work. If I try to move her much, it puts my back at risk. It won’t help her if I am debilitated.

At the moment, one of the activities that is the most risky for both of us, is the trip to the commode. I pull her up to a sitting position on the side of the bed and pull the commode close enough so that it only takes a transfer with a few side steps to get her into position, pull down her Pj’s and disposable and get her seated on the commode. That part is pretty straight forward.

The risky part comes when she is finished. I pull her up and hold her so that she can use the TP I have handed her. Most often, she just cannot balance well enough to stand on her own. I hold her with one arm, feeling her weight against it, knowing that if I let go she would fall back down on to the commode and over the back of it into the wall (does that description ring of experience?). While holding her with one arm, I have to reach down first to pull up the disposable (we call it a pad), which of course binds since I can only pull from one side, the other hand attached to the arm holding her up. It is hard for her to remember and then to have the dexterity to move her knees apart enough to get the pad through and pulled up.

Then come the pajama bottoms next. They have always gathered at her ankles. Reaching down all the way to the floor with one hand while holding her with the other high enough to be above her center of gravity so that I can keep her from falling challenges my flexibility and strength. When I think of it, I remove the PJ bottoms so that I can put them on her in a separate action while she is safely sitting on the side of the bed.

The commode trips come very often since one of the problems of a compromised Parasympathetic Autonomic Nervous System is the need to urinate frequently. The last time Daughter Lisa stayed with Mary Ann over a couple of nights, she shared with me that she was pretty concerned about the risks associated with the night time commode trips. Both of our children are very concerned about the precarious nature of our situation. They recognize that it would not take much to mess up our system. If I am not able to handle Mary Ann, either due to her physical condition or mine, a whole new set of challenges would emerge. None of us wants even to think about it, although it is hard not to do so.

One other activity has become more challenging since the hospital. There are more times when she can’t open her eyes, and/or is almost too weak to walk making the short trip from the door to the car pretty difficult. If this continues, I will set up the aluminum ramps and roll her down the two steps to the door of the car in her transfer chair. Oddly, steps are far less problem to handle than walking on a level floor to those with Parkinson’s. Steps usually are her best thing.

While I need cardio-vascular conditioning exercises, I think I am getting plenty of upper body strengthening in this caregiving role.

It is still only mid-day, but this has gotten far too long — as have most of the recent posts. She is still sleeping. I hope to get her in the car and to the grocery store this afternoon. We will see.

November 11, 2009

Wake up! Go to Sleep! Please!

Posted by PeterT under Daily Challenges, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Therapeutic Activities, Uncategorized | Tags: Burdens of Caregiving, Caregiver's Health, Caregiver's Source of Strength, Caregiver's Therapy, Caregiver's Whining, Caregivers Bathroom Duties, Caregivers Household Duties, Caregivers' Sleep Deprivation, Caregiving Spouses, Consequences of sleepless nights, Coping with Challenges, Daytime Napping and Sleep, Daytime Sleeping due to Dementia, Dementia and daytime sleeping, Feelings of Care Receivers, Feelings of Caregivers, Grumpy Caregivers, Hallucinations, Help Needed for Caregivers, How Long to Let Sleep, Incontinence, Mealtimes with Handicapped, Meaningful Caregiving, Parkinson's Disease, Parkinson's Disease Dementia, Practical Caregiving Ideas, Quality of Life, Sleep issues, Sleepless Nights, The Good Life, Writing as Therapy |
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It was a night from Hell. We have plenty of them. I went to be early in hopes that my presence would help her sleep. Not so. She wanted to go home more than once. Often she would get up and when I asked, admit that she didn’t know why she had gotten up. Once she woke up and said she had swallowed a snake. I have no idea from where that thought came.

It went on through the night. Once there were only seven minutes between times of getting up with some need. The next one was twelve minutes. Then came a couple about twenty minutes apart. I am just tired enough that I went back to sleep during each of those short times, only to be wakened again. I am not sure what words to say to communicate the level of frustration with that behavior.

One of the times she got up, she agreed to go to the table and eat some applesauce. We started toward the dining room, and soon it was apparent that she just couldn’t walk well enough to make it there. I asked her not to move, while I ran a few feet to get the transfer chair. Of course she fell. My level of frustration was enough that while I was complaining about her not staying still, instead of patiently working out how to get her off the floor in a way that was safe for me and her, I just picked her up off the floor and seated her in the chair. Yes, she is only a little over 120 pounds. No, a small 66 year old man with a family history of back issues should not try to pick up someone from the floor, someone who is not able to help in the process, essentially dead weight.

While it hurts, at the moment (six or seven hours later), it is not excruciating. I am hoping only minor damage was done and that Advil, ice and a call to Chiropractor Tim will eventually take care of it.

Last night, all I wanted was for her to go to sleep! She got up early again. I just insisted that she stay in bed so that I could get another hour of sleep. Gratefully, she did stay in bed for a while.

When she got up, things were pretty difficult. I, of course, was not in a very pleasant frame of mind having been up and down every few minutes during most of the night. She was able to get some of her food eaten by herself. After breakfast she sat by the television in her PJ’s. She was in popping up mode. While at the moment, she is not fainting, her weakness and balance are making her vulnerable to falls. I got a phone call. Just as I got into the conversation, she hopped up and headed across the room. I was frustrated by the timing of it, but after determining it was a bathroom need that precipitated it, I got off the phone and got her into the bathroom and seated.

I have not mentioned this much in the last three days, but there has been intestinal activity verging on diarrhea. Sunday morning when I was gone, she had some major activity. That activity required a later cleanup that involved removing the toilet seat, taking it to the large basin I had installed in the basement storage area for things like this, soaking the toilet seat in water with lots of Clorox Bleach, scrubbing the hinges with a toothbrush, rinsing, drying, disinfecting the stool itself and replacing the toilet seat. This is all taught in Caregiver school.

The good news is that the activity does not come often. It is just takes some extra effort to keep her and whatever else clean. We have dealt with much worse in this area. This morning’s trip to the bathroom was not an easy one.

When she returned to the living room, the popping up continued. She was almost always getting up to look around at the floor. I don’t know exactly what she was seeing, but it was some sort of mess that needed cleaning up. Just going into the kitchen to get a bowl of cereal had to be done in short segments of time, often less than a minute in length so that I could check on her and get her seated again.

I had not yet gotten my morning shower. I could not trust her to stay seated for the ten to fifteen minutes it takes for me to get ready. She often agrees that she will stay seated, but pretty much does not do so. I finally realized that the only way I was going to get ready myself, would be for her to be napping.

There is such an conflict of wants and needs that converge on this simple process. I want her to stay awake during the day and sleep at night. I want her to be sleeping even during the day so that I am not dealing with the popping up, the constant needs, the hallucinations, not knowing what will come next. I should keep her up in the daytime, but when she moves into her need-for-sleep mode, she ends up hanging her head and sleeping in her chair, if not in her bed. There is a sense of relief when she is sleeping during the daytime hours, but a dread for the horribly frustrating nights that come when she can’t sleep then.

I suppose I could sleep during the day while she is sleeping. I don’t want to shift days and nights for both of us. I want to be tired enough at bed time that I can go to bed and sleep, if she will allow it. When she is asleep, I have the freedom to do things that nurture my own well-being both for my own sake and so that I don’t lose the capacity to care for her. These posts have been long and detailed lately because she is sleeping enough during the day that I am free to write. These posts have been long and detailed these last days since we are almost entirely homebound now and the task is frustrating enough that I need the outlet of writing these posts as therapy.

Then there is the question, how is Mary Ann dealing with this new place in our experience. She is stuck with the frustration of not having the mobility and mental acuity she has had, and she is stuck with Grumpy Caregiver who gets frustrated with things she cannot control. She vacillates between days when she is exhausted and just wants to sleep, and nights when she can’t sleep, wants to be up while the person on whom she depends is scolding her and insisting she stay in bed. She needs food but often not what is in front of her. She hates the feeling of needing to be fed but often needs to be fed. She wants to do things for herself but is constantly being asked to sit down, being reminded that she can’t do them.

I wish I were better at this caregiving task. On the positive side, I think that most of the time I act in ways that are caring and helpful and affirming of who she is. I try to treat her with respect, recognizing that my words are not always respectful when I am frustrated with some difficult behavior that seems still to be under her control (probably most often a result of the disease more than her willfulness). I work hard at keeping her neat, hair washed, dressed appropriately, the house in order, beds made, kitchen in order. I work very hard at determining what she needs or wants and if it is possible, trying to provide whatever it is. With that said, in fairness, my assessment is based on who I want to be, not necessarily who I am in her eyes. In the area of this sort of self-awareness, my propensity to feel guilty when I have been unkind provides some internal metrics. My self-centeredness drives me to do things that allow me to feel good about myself. My batting average in that task is probably just that, painfully average.

Back to our day: When med time came after she had been sleeping for a couple of hours, I decided not to make yesterday’s mistake. After I took her to the bathroom, she stayed up for us to head to Glory Day’s Pizza to bring a couple of slices home for her (lunch and supper). Her mobility was very poor, and she still would not open her eyes, so the trip out to the car and back afterward was pretty difficult.

She insisted on eating the slice of pizza without help. She only managed to eat the topping (cheese only) from a little more than half of the one piece. Then she was done. After refusing once, she finally agreed to a dish of ice cream. She is about five pounds lighter on our scale than she was the last time she weighed herself before the trip and the hospital. She has been eating so little it is no wonder. When I took her to the bathroom after the pizza, as I was getting her clothes down so that she could sit on the stool, she stopped me, asking what I was doing. She thought we were still in the dining room.

At about 4:45pm, she wanted to get her bed clothes on and get into bed. She got up again when a paid worker from Home Instead to stay for a few hours while I honored a commitment that was important to me. She was still up when I returned and went to bed at about 9:30pm. Let’s hope for some sleep tonight.

November 10, 2009

Is This The New Normal?

Posted by PeterT under Daily Challenges, Information on Parkinson's, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Uncategorized | Tags: Burdens of Caregiving, Caregiver's version of Normal, Caregivers Bathroom Duties, Caregiving Spouses, Consequences of sleepless nights, Coping with Challenges, Feelings of Care Receivers, Feelings of Caregivers, Finding what is normal, Hallucinations, Incontinence, Lewy Body Dementia, Mealtimes with Handicapped, Meaningful Caregiving, Parkinson's Disease, Parkinson's Disease Dementia, Practical Caregiving Ideas, Quality of Life, What is normal behavior for those with Parkinson's |
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I explained that she wouldn’t be able to get the pills taken if she did not open her eyes. “Will you open them now so you can take your pills?” I said. She replied, “I will when I am damn good and ready!” Now that is the Mary Ann that Joy, Terry and Cherri remember. I just laughed and told her that I liked her better when she was sleeping. She laughed too.

We both had trouble getting to sleep last night. I suspect a change in the weather and the barometer might have played into it. I think it was some time after 1am that we finally went to sleep. Mary Ann woke up very early. There were trips to the commode, a snack, a period of time she sat in the living room in front of the television while I slept.

While it was not so apparent in the early times she was up, when she got up around 8am, things did not go so well. I had asked her to stay lying down while I showered so that I would not have to come running at the sound of the thump, evidencing a fall. When I got out, as usual, she had not stayed put and was in the living room in her transfer chair.

She seemed pretty confused. Her eyes were tightly shut. She was talking as if to people. Earlier she had seen Granddaughter Ashlyn. This time she was asking Granddaughter Abigail to show her what she was drawing. They, of course, live ten hours away in Kentucky. She said a number of things to me that I just couldn’t connect with. She got irritated with me for not understanding what she was talking about.

I got her to the table for pills and yogurt. Her eyes remained closed. I put the pills and water and yogurt in front of her. She had begun putting her fingers together as if grasping something and putting them to her mouth as if eating. During our interaction about taking her pills, she seemed to be convinced that she was already taking them, even though there was nothing in her fingers. I offered to help her take them, and she refused, again, seeming to be convinced that she was taking them. After the interaction with which I started this post and the laughter that came with it, she was willing to allow me to put the pills in her mouth, a few at a time, give her water and feed her the yogurt.

She kept her eyes closed and would on occasion talk about things she thought she saw, seemingly unaware that her eyes were still closed. Zandra, her bath aide, came to give her a much needed shower and wash her hair. I usually wash it at least once between Zandra’s Wednesday and Monday visits. Mary Ann had been in bed almost the entire time. When she was up for the couple of hours three or four times in the last three days, I offered many times, but she declined having her hair washed.

Zandra reported a comment Mary Ann made as Zandra was getting her cleaned and dressed. Mary Ann mentioned how tired she was and how much she was sleeping, and then she told Zandra it was the dementia. That comment surprised me since I just did not expect that level of self-awareness. I talk about our situation in front of Mary Ann, using language that matches what I understand to be so. Trying to spare her by only talking about the facts in whispers away from her hearing seems to me to risk reinforcing mistrust and encouraging paranoia, which is one of the expected symptoms of this strain of dementia (Parkinson’s Disease Dementia, a Dementia with Lewy Bodies – different from Alzheimer’s Dementia).

Mary Ann has identified the probable cause of the daytime sleeping. That is one of the symptoms of Lewy Body Dementia. As the disease progresses, often the daytime sleeping increases. I seem to recall William posting online that Cindy (he calls her Sweet Cindy) is sleeping about 21 of the 24 hours each day.

Mary Ann laid down for a nap right away after Zandra got her cleaned up and dressed. After a while, one of her pill timers went off. I always give her the one of two pills while she is lying down, lifting her head, and putting the straw to her mouth. In the past it has always worked to do the pills that way. This time, while she was alert enough to indicate that they were still in her mouth, she was not able to suck on the straw. I had to sit her up completely and put the cup to her mouth to get the water in so that the pills would go down. Struggling with pills, both this morning and during nap time, is a distressing development, hopefully, a temporary one.

Needless to say, I called and canceled the appointment with the Dentist. She slept soundly through that entire time. Trying to force her to get up when she is sleeping as she is now, is not much of an option. She pretty much can’t be aroused, or if she is, she can’t track mentally, her head hangs down and she can’t get her balance or her feet to move.

I am not ready to accept that our new normal will include constant hallucinations and sleeping entire days at a time, but I do recognize that we will probably need to accept a new normal of some sort, one at a significantly lower level of functioning than about ten days ago. It is what it is. We will adapt and find ways to live meaningfully with what we have.

Accepting a new normal does not mean there is no longer any option for improvement. While the long term trajectory of this disease is not good at all, the short term is very unpredictable. Dramatic changes for the better can happen just as quickly as changes for the worse.

It is a little after 2:30pm and she is still sleeping. She was able to take the last round of meds in our usual pattern, while lying down, with me holding up her head. She managed to use the straw.

As I sat on the deck yesterday, I concluded that I would rather be sitting there with her lying in bed, than be sitting there without her lying there in bed. If this continues, I don’t know how I will feel a week or a month or a year or an hour from now, but at the moment, there is nothing I want to be doing so much that I would prefer it to having her here with me to care for. Those of you who have lost a spouse know the profound loneliness that comes. With Mary Ann, even sleeping, here in the house, there is some loneliness, but not of the deep and painful sort.

I gave Mary Ann her last pill at about 5pm, and she finally got up. I consider myself a reasonably intelligent person, but I managed to completely blank on an obvious reality. She needed to have been awakened and taken to the bathroom. Her pad was full to overflowing. Zandra had put a daytime pad on, not realizing that she would end up in bed for most of the day. Needless to say, the sheet and her jeans needed to be washed. Since I put Chux (a plastic pad with absorbant paper on top) under the bottom sheet to protect the mattress pad, the clean up was not too bad. At this point, I think we can put away the daytime pads unless things change for the better.

She is not eating much no matter what I offer, up to and including ice cream. Her ability to walk has diminished dramatically. She went to bed at about 8pm and has been restless off and on for a while. It is now about 10:30pm, and for the moment she seems settled. We will see how the night goes.

Addendum: She just stirred and decided she wanted to get dressed. She didn’t want to spend the day in her pajamas. I explained that it is after 10:30pm, and it would be hard for me if she was up for the night and slept during the day. When I asked what she would do if she got up and dressed, she said she would read. Finally, she decided she could watch television in the bedroom without getting dressed. I assured her I would be heading to bed soon. This may be a long night.

November 8, 2009

Fourth Day Home From The Hospital

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues, Sources of Strength, Therapeutic Activities, Uncategorized | Tags: Adapting to changes in plans, Adjusting Medications, Administering Medications, Burdens of Caregiving, Caregiver's Health, Caregiver's Source of Strength, Caregiver's Therapy, Caregivers Bathroom Duties, Caregivers Medical Responsibility, Caregivers Need Flexibility, Caregivers spirituality, Caregiving Spouses, Consequences of sleepless nights, Coping with Challenges, Feelings of Caregivers, Finding what is normal, Help Needed for Caregivers, Impact of Changes, Importance of Bowel Movements, Managing Medications, Mealtimes with Handicapped, Meaningful Caregiving, Parkinson's Disease, Parkinson's Disease Dementia, Practical Caregiving Ideas, Quality of Life, Spiritual Formation Group, Spiritual Renewal, Support for Caregivers, Support System for Caregivers, Value of Friends' Support |
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It is about 11:30am and Mary Ann is still sleeping. She got up last evening long enough to eat some ice cream and apple crisp. Then she took her pills, went back to bed and slept the entire night. This morning, there was a commode trip at about 7am, then at about 8:30am she got up long enough to have juice (with Miralax) and yogurt. Then she decided she wanted to go back to bed.

The good news about this is that when she has been up, she has been able to interact verbally and has not been picking up threads that are not there, nor has she acted as if she was hallucinating. Her head is no longer hanging down on her chest. Needless to say, those are encouraging signs. She is still unable able to eat without assistance. I fed her last night and this morning, even putting her pills in her mouth. She did manage to lift the cup and drink most of the juice by herself.

Yesterday, I chose not to awaken her for medications. Most of her meds are intended to help her when she is up and about. Most of them have a short half life. They help when they are in her system, but are not necessarily maintaining a constant level of medicine 24/7. Missing one dose of the meds seemed to me to be acceptable. I concluded that the rest was more important. She did take her night time meds, so there has been no interruption in them. She took the morning pills today, and while she was lying in bed, I changed the Exelon patch she had worn for two days. That is a med that needs not to be stopped for long. It is pretty powerful and when initiating the patch, it takes a month on a lower dose to keep from creating the unpleasant side effect of pretty bad nausea — been there, done that. I am also going to wake her up for the meds that come every two hours during the day. My goal is to return to and maintain a normal schedule in hopes that will help us return to the pre-hospital norm.

The other parallel recuperation activity needed includes intestinal activity. There has been some activity, this morning during the 7am trip to the commode. Then before going to back to bed after breakfast (the yogurt, juice and pills) there was a little more substantial activity. At the risk of being indelicate (there is nothing delicate about being a Caregiver), it is still at the stage where manual help is needed. With that lovely image in mind, you can appreciate my excitement when things come out on their own and Dr. Oz’s S appears. We are not yet back to that wonderful normal. At this point I am hopeful that in a couple of days we will be there.

Of course I cannot know where this will go, but my intention is to methodically do all the things we have normally done in the past as they are possible. My hope is that by Tuesday, a week from leaving the hospital, normal will have returned. Whatever is so by then will probably need to be established as our new norm.

My need to establish a norm of some sort, any sort, comes from the way I am wired. When I get a set of expectations in mind, it is tough for me to incorporate changes very quickly. Since retirement, the rewiring is in progress. By removing almost all commitments, there is space and time to adapt to whatever changes come without the added stress of failing to meet those commitments. When we went to the hospital, there were a few appointments (dentist, doctor, among them) to be changed, but nothing for which I had to find substitutes or burden others to do for me.

Even though things can change dramatically at any moment (as in Saturday’s entrance into the hospital), the norm is where my pivot foot rests when I turn to meet the unplanned, unexpected. Unlike Michael Jordan in his best days, I cannot hang in the air for very long without a place to stand.

In a moment of devotional time last evening, I read this prayer. I receive a weekly email from the National Catholic Reporter web site with a devotion by Fr. Ed Hayes. (Yes, they allow Lutheran Pastors on their site.) I have appreciated his writings for decades, and I had the privilege of doing a marriage ceremony with him many years ago.

I need prayers for flexibility!

A Psalm of Flexibility

By Ed Hays

Created Nov 06, 2009

O spirit of God’s eternal springtime heart,
grant me the virtue of elasticity.

Make my heart as boundless as my Beloved’s heart,
which at this moment is creating
new galaxies and infant suns.

Make me pliable and playful with your Spirit
as you teach me the alchemist’s recipe
of how to keep my heart’s skin
like baby’s skin, ever-expansive,
able to hold the wildest of wines.

Stir my mind well with your sacred spoon
to awaken the fermentation of ideas
stilled by the ten thousand little compromises
required of me by the stiffness
of the old leathered skins of society and religion.

Gift me with elastic frontiers of heart and mind,
so I can see before my eyes,
both in the heavens and on earth,
how old and ever-new are those partners
passionately dancing together
in the perpetual birthing of your universe.

From Prayers for a Planetary Pilgrim by Ed Hays

The Spiritual support I receive through Ed’s writings, through the Taize Music from their site, from Weavings, a spirituality journal, through Scripture, corporate worship and the Spiritual Formation Group that meets at our house weekly, helps provide the source strength that has allowed survival so far.

There are many wonderful folks who give personal support to our household. Yesterday afternoon, John called and asked to come over for a time to talk. John has been a support for very many years. Mary, our friend who schedules Volunteers, had let him know that things were getting a little hard to handle at our house. Yesterday, Edie, the leader of our Spiritual Formation group emailed about the possibility of bringing dinner over. Don and Edie came over and we feasted on lasagna, salad, gourmet bread, some Shiraz red wine, topped off with apple crisp and vanilla ice cream. Mary Ann slept through supper, but ate a big bowl of apple crisp and ice cream later in the evening.

It is now about 1:30pm and Mary Ann is still sleeping soundly. She has had two rounds of the meds that come at two hour intervals during the day. To administer the meds, I put my hand under the pillow, lift her head, put them in her mouth, hold a straw to her mouth and she drinks until the pill(s) are down. Often, when I give her the pill(s), she gets up from napping. The last few days when I let her head back down, she just goes back to sleep. It has not been unusual in the past for her to continue to sleep, just not so many times in a row.

She finally got up and dressed around 2:30pm. She ate a little more, then provided some unaided intestinal activity worthy celebration. She went back to bed at about 5pm. It is 9:30pm now. She is still sleeping. We will see how the night goes.

November 4, 2009

Home From The Hospital.

Posted by PeterT under Daily Challenges, Help from Others, Meaningful Caregiving, Practical Tools for Coping, Relationship Issues | Tags: Burdens of Caregiving, Caregiver's Health, Caregiver's Role at Hospital, Caregiver's Source of Strength, Caregiver's Therapy, Caregivers Bathroom Duties, Caregivers Household Duties, Caregivers Medical Responsibility, Caregiving Spouses, Consequences of sleepless nights, Coping with Challenges, Dementia in Hospital, Dreaded Hospital Stays, Fainting complicates Parkinsonians' Lives, Feelings of Care Receivers, Feelings of Caregivers, Freedom for Caregivers, Grumpy Caregivers, Hallucinations, Help Needed for Caregivers, Hospital Stays Increase Dementia, Lewy Body Dementia, Meaningful Caregiving, Music Therapy for Caregivers, Parkinson's Disease, Parkinson's Disease Dementia, Practical Caregiving Ideas, Quality of Life |
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Finally! We came home around 3:30pm today. While the staff at the hospital was wonderful, and Mary Ann had excellent care, the dementia has increased dramatically. Physically, she is fine. We are back to normal, riding the margin between heart issues and Autonomic Nnervous System issues (fainting due to sudden drops in blood pressure). It is not, of course, where we would choose to be if we had a choice, it is just what is so.

From the very first sleepless night, the first night we were there, the decline has been steady. Last night was terribly difficult. I put up the rails on the bed so that she would not get up and try to walk by herself on a very slippery, very hard floor. She just could not accept that the catheter allowed her to stay in bed rather than head to the bathroom. She saw people and animals and messes here and there. Today she described in detail a busy cluster of bees on the floor at some time during the night.

I sat beside her on her bed for fifteen minutes to a half hour a number of times during the night. At one point when she was awake, in the middle of the night, I checked my watch to see how much time there was between the need for me to get up and respond to her or help her. The time was usually between ninety seconds and two minutes.

I realized that if we were required to stay another night, I would need to arrange for a paid companion so that I could get some sleep. The constant nighttime needs are more than I can handle and remain rational, patient and helpful, after just two or three nights like last night.

Talking with the doctors helped clarify just how important it was to get back home to a stable routine and familiar setting. They agreed that the additional tests being considered would not serve any real purpose.

While there were differing opinions by the two doctors and the Physician’s Assistant, two out of three felt that there was no compelling reason to expect more vulnerability to Congestive Heart Failure than there has been since the first bout five years ago. We are going to return to our pattern of life to the degree the dementia will allow.

Mary Ann decided to go to bed at 5:30pm this evening. She has been up and down a a few times already. Of course, I won’t know how tonight will go until morning.

I had mentioned in passing to one of the nurses that I appreciated having all the folks at the hospital with the care recognizing that Mary Ann and I would pretty much be on our own to deal with the aftermath when we got home. I suspect she mentioned it to the Social Worker at the hospital who came in to talk with me before we left. It is the norm that a Hospital Social Worker will check to see what if any needs there might be when a patient goes home. This time the questions indicated some extra effort at listening to our situation.

The Social Worker mentioned that the nurses had spoken well of the care being provided Mary Ann. Since I am no longer in a role that provides opportunity for external validation it was especially meaningful to hear those words of affirmation. The Social Worker seemed to feel very good about the support system we have, from family and the congregation. She sees folks who have little or no support as they try to care for a Loved One.

The day tomorrow is a full Wednesday. It will be interesting to see how Mary Ann does with all that will go on. I am going to continue our activities based on the assumption that alertness and the ability to track will return and the hallucinations will diminish. It that improvement does not come, we will adapt. It is what we do.

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